For Some With Intellectual Disabilities, Ending Abuse Starts With Sex Ed

Katy Park, who runs arts and wellness programs for Momentum — a community service program for people with intellectual disabilities — starts a class on healthy sexuality by asking her students to define what they want in a relationship.

Park asks her students to weigh in on agreements with a thumbs up or a thumbs down during class.

Brianna Soukup for NPR

Listen

Listening...

/

Originally published on January 9, 2018 1:41 pm

Editor's note: This report includes graphic and disturbing descriptions of sexual assault.

In the sex education class for adults with intellectual disabilities, the material is not watered down. The dozen women and men in a large room full of windows and light in Casco, Maine, take on complex issues, such as how to break up or how you know you're in an abusive relationship. And the most difficult of those issues is sexual assault.

Katy Park, the teacher, begins the class with a phrase they've memorized: "My body is my own," Park starts as the rest join in, "and I get to decide what is right for me."

People with intellectual disabilities are sexually assaulted at a rate more than seven times that for people without disabilities. NPR asked the U.S. Department of Justice to use data it had collected, but had not published, to calculate that rate.

At a moment when Americans are talking about sexual assault and sexual harassment, a yearlong NPR investigation finds that people with intellectual disabilities are one of the most at-risk groups in America.

"This is really an epidemic and we're not talking about it," says Park, a social worker who runs arts and wellness programs for Momentum, an agency based in Maine that provides activities in the community and support services for adults with intellectual disabilities. Those high rates of abuse — which have been an open secret among people with intellectual disabilities, their families and people who work with them — are why Park started this class about healthy relationships and healthy sexuality.

Because one of the best ways to stop sexual assault is to give people with intellectual disabilities the ability to identify abuse and to know how to develop the healthy relationships they want.

"Let's talk about the positive parts of being in a relationship," Park says, holding a marker while standing at a whiteboard, at the start of the class. "Why do we want to be in a relationship?"

"For love," says one man. "And sexual reaction."

"Romance," adds a woman.

"How about support?" asks Lynne, a woman who speaks with a hushed voice and sits near the front of the class.

From working with the men and women here, Park realized they want to have relationships, love and romance. They see their parents, siblings and their friends in relationships. They see people in relationships when they watch TV or go to the movies. They want the same things as anyone else.

But it's harder for them. When they were in school, most of the adults in this room say, they didn't get the sex ed classes other kids got. Now, just going on a date is difficult. They probably don't drive or have cars. They rely on public transportation. They don't have a lot of money. They live at home with their parents or in a group home, where there's not a lot of privacy.

And then there's the one thing that really complicates romance for people with intellectual disabilities: those high rates of sexual abuse.

"Oftentimes, it actually is among the only sexual experience they've had," says Park. "When you don't have other healthy sexual experiences, how do you sort through that? And then the shame, and the layers upon layers upon layers."

This class, she says, is about "breaking the chain, being empowered to say, 'No. This stops with me.' "

"I think people take advantage"

The women and men come to Momentum during the week for different programs. They go kayaking and biking; they go to the library and do volunteer work at the local food bank. There's a range of disability here. You can look at some of the men and women — maybe someone with Down syndrome — and see they have a disability. Others, even after you talk to them, you might not figure out they have an intellectual disability.

Like one small woman with short, choppy dark hair, streaked red.

She's 22 now, but when she was 18, her boyfriend was several years older. She says he was controlling. He didn't let her have a cellphone or go see her friends.

"He was strangling me and stuff like that," says the woman. (NPR is not using her name.) "And he was, the R-word — I hate to say it, but rape." She says he raped her eight times, hit her and kicked her. "So I don't know how I'm alive today, actually. He choked me where I blacked out."

She thinks she was an easy target for him, because of her mild intellectual disability. "I think people take advantage," she says. "They like to take advantage of disabilities. I have disabilities, not as bad as theirs. But I think they like to take advantage, which is wrong. I hate that."

She says the class helped her better understand what she wanted, and had a right to, in a relationship. She's got a kind and respectful boyfriend now.

Her friend Lynne listens and says she would like to find a boyfriend. But in her past, she has experienced repeated sexual abuse.

She talks about a time when she was 14 and "this older guy that knew us" forced her to have sex. She says she told people but no one believed her. The next year, when she was 15, she was sexually assaulted — this time by a boy at her school. "I was trying to scream," she says, "but I couldn't because he had his hand over my mouth, telling me not to say anything to anybody."

Lynne, who is 38, says those rapes and others left her unable to develop relationships. "I couldn't trust anyone," she says. Lynne (NPR has agreed to identify her by her middle name) says this class has helped her realize she wants a real, romantic relationship and has taught her how to better find one.

"There's a lot of loneliness"

Katherine McLaughlin, a New Hampshire sex educator, developed the curriculum used by Momentum. She wrote it so that it uses concrete examples to describe things, to match the learning style of people with intellectual disabilities. It shows pictures and uses photographs.

McLaughlin says the main desire of adults with intellectual disabilities is to learn "how to meet people and start relationships. There's a lot of loneliness."

That loneliness leaves them vulnerable to getting into abusive relationships, she says, or to rape.

Sometimes, especially when they're young, they can't name what happened to them as a sexual assault. Because they didn't get the education to identify it. "We don't think of them as sexual beings. We don't think of them as having sexual needs or desires," McLaughlin says. "Often they're thought of as children, even when they're 50 years old."

Sheryl White-Scott, a New York City internist who specializes in treating people with intellectual disabilities, estimates that at least half of her female patients are survivors of sexual assault. "In my clinical experience, it's probably close to 50 percent, but it could be as high as 75 percent," she says. "There's a severe lacking in sexual education. Some people just don't understand what is acceptable and what's not."

Most of the women and men at the class in Maine say they didn't get sex ed classes, like other kids, when they were in school. Or if they did, it was the simplistic warnings, like the kind given to young children. "It's easy to fall back on 'good touch-bad touch' sex ed," says Michael Gill, the author of Already Doing It: Intellectual Disability and Sexual Agency. "That's a lot of what they get." And the usual warning about "stranger danger" can be unhelpful, because it's not strangers but people they know and trust who are most likely to assault them.

Most rapes are committed by someone a victim knows. For women without disabilities, the person who assaults them is a stranger 24 percent of the time. NPR's data from unpublished Justice Department numbers show the difference is stark for people with disabilities: The abuser is a stranger less than 14 percent of the time.

"Parents get this; professionals don't," says Nancy Nowell, a sexuality educator with a specialty in teaching people with developmental disabilities, an umbrella term that includes intellectual disability but also autism.

Parents have significant reason to worry: Figuring out what's a healthy relationship is difficult for any young person, and it can be even trickier if a person has an intellectual disability. People with intellectual disabilities are vulnerable to problems from rape to unwanted pregnancy. Some people with intellectual disabilities marry. A small number have children — and rely upon family or others to support them as parents.

Still, says McLaughlin, parents often are reluctant to talk to their children with intellectual disabilities about sex. "Parents often feel, if I talk about it they will go and be sexual," she says, and they fear that could make them targets for sexual assault.

But educators such as McLaughlin, Gill and Nowell argue the reverse: that comprehensive sexuality education is the best way to prevent sexual assault. "If people know what sexual assault is," says Gill, an assistant professor of disability studies at Syracuse University, "they become empowered in what is sexuality and what they want in sexuality."

Respect

Gill argues that a long history of prejudice and fear gets in the way. He notes early 20th century laws that required the sterilization of people with intellectual disabilities. That came out of the eugenics movement, which put faith in IQ tests as proof of the genetic superiority of white, upper-class Americans.

People with intellectual disabilities were seen as a danger to that order. "Three generations of imbeciles are enough," Supreme Court Justice Oliver Wendell Holmes famously wrote in a 1927 opinion that ruled the state of Virginia could forcibly sterilize a young woman deemed "feebleminded."

Carrie Buck was the daughter of a woman who lived at a state institution for people with intellectual disabilities. And when Buck became pregnant — the result of a rape — she was committed to a state institution where she gave birth and was declared mentally incompetent to raise the child. Buck was then forcibly sterilized to prevent her from getting pregnant again. There was evidence that neither Buck, nor her daughter, Vivian, was, in fact, intellectually disabled. In the first half of the 20th century, impoverished women who had children outside marriage were often ruled by courts to be "feebleminded."

There was another myth in popular culture that people with intellectual disabilities were violent and could not control their sexual urges. Think about that staple of high school literature classes, John Steinbeck's Of Mice and Men. The intellectually disabled Lennie can't control himself when the ranch hand's wife lets him stroke her hair. He becomes excited, holding her too tight, and accidentally strangles her.

The class in Maine aims to help these adults know what's a healthy relationship and how to communicate how they feel about someone.

The main way this class differs from a traditional sex ed class is that — to help people with intellectual disabilities learn — the material is broken down and spread out over 10 sessions. Each class lasts for 2 1/2 hours. But the adults in the class are completely attentive for the entire session.

They do take a couple of very short breaks to get up and move around, including one break to dance. Everyone gets up when Park turns on the tape recorder and plays — just right for this group asking to be treated like adults — Aretha Franklin singing "Respect." There is joyous dancing and shouts. And when the song is over, they go back to their seats and get back to work.

Related Content

Only 17.5 percent of Americans with disabilities over age 16 are employed, compared with 64.7 percent of the population without disabilities, according to the U.S. Department of Labor. But according to John Dickerson, executive director of the service and advocacy organization Arc of Indiana, there are more opportunities now than ever for people with developmental and intellectual disabilities to find meaningful employment outside of the traditional "sheltered workshop" model. Sound Medicine host Barbara Lewis recently spoke with Dickerson and Michelle Fischer, a young woman who lives with cerebral palsy and hosts a podcast on disability issues for the Arc of Indiana.

SAN FRANCISCO — Janet Prochazka was active and outspoken, living by herself and working as a special education tutor. Then, in March, a bad fall landed her in the hospital.

Doctors cared for her wounds and treated her pneumonia. But Prochazka, 75, didn’t sleep or eat well at Zuckerberg San Francisco General Hospital and Trauma Center. She became confused and agitated and ultimately contracted a serious stomach infection. After more than three weeks in the hospital and three more in a rehabilitation facility, she emerged far weaker than before, shaky and unable to think clearly.

To understand why teen pregnancy rates are so high in Texas, meet Jessica Chester. When Chester was in high school in Garland, she decided to attend the University of Texas at Dallas. She wanted to become a doctor.

"I was top of the class," she says. "I had a GPA of 4.5, a full-tuition scholarship to UTD. I was not the stereotypical girl someone would look at and say, 'Oh, she's going to get pregnant and drop out of school.' "

Content on this site provides general information relating to health and is not intended to be a substitute for consultation